Shock, trauma & hope: A life-changing journey through neonatal care

It has been 140 days since I heard the words “Oh this is not good, not good at all. This baby has to come out”. It’s been 139 days since my baby was born at 29 weeks by emergency c section, weighing 2lb 2oz, having stopped growing some weeks before.

For quite a while afterwards, whilst still in a state of shock, I would find myself telling anyone who would listen that I’d had a premature baby. I told bank tellers over the phone that I’d had preeclampsia; I told the dry cleaners I’d had a c section. I told delivery men who came with packages, that my baby was in intensive care. I found myself telling a stranger in the vegetable aisle about my little bean of a baby who was currently growing in an incubator rather than in me; an “artificial womb” if you will. A complete stranger!

Now, 140 days later and my baby is home and (dare I say it) …thriving. And yet even now I find it hard not to shout I’VE HAD A PREMATURE BABY at traffic wardens whilst in the supermarket car park.

This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed. I can now talk a good talk around an intensive care baby unit. I understand the transition from ICU to HDU.  I know all the different ways to store breast milk. I understand the loneliness of a breast pump at 3am; how devastating it is to have to try and trick your breasts into producing milk, when your body has barely realised it was pregnant, let alone known it has delivered a baby. I know about the intense feeling of loss, having had a pregnancy so rudely interrupted and ended. I will never know the satisfaction of growing and delivering my own baby.

And I also know about the brain scans, lung X-rays, heart monitors, countless blood tests, oxygen saturation levels, cpap machines and ventilators. I know what NEC, RSV and ROP stand for both literally and metaphorically. All things I was happy not knowing about, not least in relation to a baby; my baby.

We are so fortunate that our little miraculous bundle managed his ICU journey relatively uneventfully and with little fuss. He quietly made his way through the Neonatal unit, graduating 2 months later, when he was discharged and allowed home. What an incredible little human we have been gifted.

And even still, the mark of our NICU journey remains with me. I think about it all the time. It never leaves. Everyday I relive some of those 140 days, through vivid flashbacks and intrusive memories.

I am also reminded how lucky we are. There are also miraculous little fighters who didn’t manage to come home and whose journey began and ended in the NICU. I think of those wonderful babies whenever I see mine.

A few weeks ago a friend kindly suggested we should keep an eye out for our child, even throughout school, due to his prematurity. “You can tell the early ones” she helpfully observed. That may well be the case, but I’m determined that while my experience of pregnancy, birth and NICU has changed me, it will not define my child’s life. As soon as he is old enough to understand, I will stop talking about my experience. I don’t want him hearing adults discussing him or his early arrival. I don’t want him to hear all the reasons why he might not be as big as the other boys; why he might not be able to grasp things as quickly or why he struggles with some everyday tasks. My boy is a fighter and can accomplish amazing things. We know this because he’s done it already.

Whilst I might be a member of the premmie club, which brought me grief, sadness, worry and miracles in equal measure, these are all chapters of my story; I’m determined they won’t be part of his. He’s not a member of this club. He’s a strong, determined, ingenious little boy who held his mum’s hand and led the way, guiding me through a nightmare of a journey. This is what will define my little boy.